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Xeljanz (Tofacitinib Citrate): My experience on the trial
I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.
I thought it would be nice for everyone if I documented my progress on here.
Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.
The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results.
I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.
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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by nzahir on
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Hi guys, I have been on 10mg a day for 8 months and basically no response besides some eyebrow regrowth mostly on the top of eyelid and some eyebrow fuzz, not much else. 23 year old male in good shape with AU for past yearish.
Me and my derm are bumping up to 20 mg a day for 4-6 months to see if I am a non responder or a very late responder that has a high amount of JAKs in the body.
My derm says if I respond well then we will lower back to 10-15mg or go to a phase 3 trial for a medication just for Alopecia (its just inhibits 1 JAK instead of 2) if they accept me. If I don't respond, I may have to go to a phase 4 trial if possible for that medication.
Anyone here go on 20mg or know of any non responders
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I have been on 10 mg for 6 months with no response, upped to 15 and then 20 on month 8 - started seeing some response after that. Very slow though, but things are happening.
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Where are you growing hair?
My eyelashes are most visible and very very little eyebrows, like mostly fuzz
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Hey all,
I posted earlier last week mentioning my spot is slowly growing back -- but with good news comes with questionable news. For those that have had full regrowth have any of you noticed shedding? I always had about 10-20 hairs comes out but now I am noticing about 20-30 hairs and when I brush my hair its about 10 hairs (not all the time)
Its only on the top of my head not the sides. Is this shedding our am I being hyperaware?
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I'm not sure if this is a spot slowly growing in or just the crown of my head well just being a man. It's off to the right rather then dead center
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Permalink Reply by Rascalx2 on
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Dude think you are a little paranoid, cant even see what you’re talking about, you have 100% growth
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Agree with Rascal. Your hair is spiraling around that area. It looks like that for everyone, even people without alopecia
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looks great Newjack- but I totally understand the paranoia- I notice increased sheds now and then but I think to a degree some of it is over vigilance given our traumatic experience but also maybe our hair cycle trying to normalise, given we have had such a huge disruption to our hair growth cycle.
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Hello ,
Next week I have an appointment for influenza vaccination.i am on xeljanz for 2 years with 90% hair regrowth( short and thin hair), I would like to know is vaccine has any effect ,could you please share your experience or knowledge with vaccine?
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Zarrin- I haven’t had the flu vaccine but have been told it’s ok as it is not a live vaccine. The vaccines that are a problem are the ones that are live. That said I understand the nervousness- our immune systems seem so disordered - but I think the risk of dealing with a bad bout of the flu maybe worse then getting the vaccine.
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